I am a 37 year old woman with Gastroparesis (dx 2013) and have been dependent on a GJ feeding tube since May 2013 - have been having increasingly difficult time with tube feeds averaging about 1/2 can of peptamen 1.5 a day and very limited/no oral intake. 200 pounds and intake less than 500 calories daily. I also have pelvic floor dyssnergia which has been adding to misery. I have been seeing biofeedback/physical therapists for the rectal issue since this past Nov. using sensors and massage with no improvement, in fact continues to get worst. The therapists actually released me from their care due to not knowing what else to do. I have also been dealing with constipation and asked to have a sitz marker study which showed All 120 markers in right colon bunched together leading me to colonic inertia dx. I am currently taking Linzess 290, miralax 3x daily, lactulose 2-3x daily, senna, colace 2x daily and fleet enemas if needed until my next GI appt (have tried amitiza with no relief) I'm also taking 8mg zofran odt, levsin dissolvable when needed, and mirtazapine 45 mg. (reglan has been tried a few times but side effects too much and no improvements.) I have been told that I would not be a candidate for gastric stimulator because I'm not diabetic and because of the intestinal issues.
The reason I am writing is to see if you could either attach or guide me to some research regarding Mestinon for improved motility and/or information regarding total colectomy with ileostomy bag as I was told that these were my only possible treatment options. Due to my rectal issues, resection would not be a viable option. I am okay with having my colon removed if it would improve my quality of life and help with nutrition input which are both very poor currently.
Thank you in advance for any research and/or advice you can offer.